Life Doesn’t Fit in a File Folder

Today is World Benzodiazepine Awareness Day.

This is my contribution.

Note: I should have probably taken a moment to think about dressing up, or putting on makeup, or doing something with my hair.

But you know what? This is 100% authentically me, speaking honestly about a topic I know way too much about.

https://www.youtube.com/watch?v=7p8Ta4CM258

I respond to all comments left here on my blog. Please feel free to leave one.

NOTE: It is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume he/she knows how to do it well even if he/she claims to have experience. Doctors are generally not trained in discontinuation and may not know how to recognize withdrawal issues. It’s important to educate yourself and find a doctor who is willing to learn with you as your partner in care. 

tweet me @rasjacobson

 

 

 

Monday is World Benzodiazepine Awareness Day. Below, you’ll find information about Monday’s event and a video featuring individuals from around the globe who have been injured by benzodiazepines. My own video will go live on Monday, July 11, 2016. 

•   •   •

Instead of teaching us to slow down and take time to care for ourselves, our culture teaches us that we’re supposed to hurry up as quickly as possible so that we can get back to work. We believe doctors have our best interests at heart, and we are taught to admire them  – not question them. We have put our faith in science, and with drug companies now pimping their wares on television, it’s only natural that we’ve grown to believe that doctors and their prescription pads possess the key to salvation.

These beliefs are flawed.

I recently read that 91% of patients leave their psychiatrist’s office with a prescription in hand. . . after just one short 15-minute consult.

That’s what happened to me.

When going through a difficult time in my life, rather than being encouraged to talk about it, I was given a diagnosis and handed a 75-day prescription for Klonopin, a serious brain-altering drug.

Seventy-five days.

This, despite the fact Klonopin is intended to be used for the short-term relief of symptoms, due to the ease with which the body and brain can become tolerant to its effects, even when used exactly as directed. The British Journal of General Practice (BJGP) reports that benzodiazepine medications may induce tolerance within four weeks of regular usage.

My doctor never informed me about any of the dangers associated with long-term use of benzos.

But I trusted him, so I continued to take these drugs for seven years.

Big mistake.

H U G E .

So why am I going on and on about this?

Because Monday is National Benzo Awareness Day.

Twenty-hour hours devoted to raising awareness regarding the dangers around commonly prescribed benzodiazepines like Xanax, Klonopin, Valium, Ativan.

• to provide victims with an opportunity to unify so they aren’t left alone in the dark, as has been the case for so long.
• to educate people about this decades old problem that has been swept under the rug
• to encourage the provision of ‘specialized’ withdrawal facilities for those who desperately need them.
• to give a voice to those who have been criticized and abandoned, and left alone to suffer
• to recognize those who didn’t make it.

To be fair, I don’t believe that doctors mean to cause harm to their patients. I believe they are truly uninformed about this issue, as pharmaceutical companies are not releasing accurate information regarding these drugs.

As a result of my own independent research, I now know more about how to wean off of psychiatric medications than most doctors who make six figure salaries. (PS: It takes a lot longer than they usually suggest. And it is a lot more involved than they know.)

Part of my life’s mission has become educating the general public and doctors about the dangers of psychotropic drugs and the repercussions of unintentional chemical dependency.

https://www.youtube.com/watch?time_continue=738&v=2X6ZFmo3VBY

NOTE: It is potentially dangerous to come off medications without careful planning. Please be sure to educate yourself before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume he/she knows how to do it well even if he/she claims to have experience. 

What’s your experience with psychiatric medications? Have anti-anxiety medications/antidepressants helped you? Harmed you? I’m interested in your experience, even if it’s different from mine.

tweet me @rasjacobson

 

Many years ago, I inherited one of my grandmother’s plants: a heavy pot of thick roots and tens of long, robust green leaves with rounded tips. At first, I thought it was an orchid, but after showing it several florists who could not identify it, I decided to love my weird, unknown plant, no matter what it was.

I’ve had this plant for over thirty years now, and I remember how – just a few days after I moved into my first house – eight gorgeous orange blossoms appeared clustered atop one tall, flat stem. I hadn’t seen the stem growing or noticed any buds, so it was a complete surprise when it arrived on the scene.

Before that day, I had no idea the plant ever bore flowers, and I remember feeling a strong connection with my grandmother, a complicated woman, to whom I was always very close.

Despite the fact that my husband fed and watered it dutifully, decades passed and my plant never flowered again.

In fact, I kind of forgot that the plant flowered at all…

…until last June…

…when my plant burst into color for the first time since 1997.

At the time, I posted a photo of it on Facebook, asking if anyone could identify what it was.

Almost immediately, my friend Regina sent me a link about a rare African lily, Clivia Amaryllidceae, which – according to the article – stated that the plant normally blooms once every 20-25 years.

And as you can imagine, I was beside myself and I spent way too much time telling everyone about my amazing rare lily.

I loved seeing my plant bloom again, and I made peace with the idea that its beauty would be impermanent.

A week later, as each petal shriveled and fell off the stem and onto the floor, I thought about how grateful I was to have been able to enjoy such a simple pleasure so fully.

I resumed regular care of my lily, which meant ignoring it watering it on Saturdays, and I figured I’d have to wait another 20 years or so before I’d see it bloom again.

But guess what?

This morning I walked in to my living room and there it was, in full-bloom again, one year later, to the day.

My yoga practice teaches me to expand and deepen my appreciation of delightful moments, so I sat down on the floor next to my plant and took the time to really appreciate each flower. This time, I noticed how each orange petal is actually also yellow and green, too. I counted 7 stamens in each open blossom, and I wondered how nature knows how to do that.

And I took time to reflect.

So much has happened in the last few years.

I’ve experienced the most intense physical and psychological pain that I could have ever imagined while coming off the powerful anti-anxiety drug, clonazepam. The terror that I experienced daily for nearly 2 years is almost indescribable. I cannot believe I survived it.

There was a period where my brain was so damaged that the concept of love was just a memory of an idea. I could feel nothing at all. If a friend tied to touch me, her hand was too rough. If the sun was shining, it was too bright. If children were laughing, it was too loud. I was certain people were trying to hurt me. I was certain my food had been poisoned.

Trapped in a pain cycle, all the highly paid “experts” told me I was crazy, that it was “absolutely impossible” for me to still be experiencing withdrawal symptoms after 24 months.

And while the best conventional minds told me I was mad, there were others who knew better. People reached out to me and told me that I would be okay. That I just needed to hold on for another moment.

And another moment.

They reassured me that all the tiny moments would add up.

They said the moments would grow into minutes.

Which would grow into hours.

Which would grow into days.

They told me there would be days where I would go backwards, where my symptoms would intensify. They told me it was all part of the healing.

They told me to trust the nature of things.

Nature knows what to do, they told me.

I’ve always believed in angels, and I believe — more than ever – that we are all surrounded by a powerful, invisible magic. I’ve tried to speak of this many times while I was growing up, of my intense connection to something beyond the visible, a cosmic force that I have experienced directly many times, but I was teased and laughed at.

Today, I realize I’m in touch with something that other people don’t have.

(Or don’t want to have.)

I have an incredible power.

A sixth sense.

I have it and I listen to it.

I know that to “normal people” that sounds crazy.

Guess what? I don’t give a fuck.

My life is not going to be normal.

My path is going to be crazy.

Today, I am certain that my grandmother is communicating with me via this plant that we share, this tender life that we have spent over 60 years nurturing, separately, yet together. Today, she is telling me that I’m on the right path, reminding me that beautiful things happen when we aren’t looking, or waiting, or expecting or trying to control everything.

I don’t have much to offer these days.

No fancy home.

No fancy clothes.

But I can promise you this.

Whenever you are in the midst of something dark, whenever you find yourself in the midst of so much uncomfortable change, underneath all the fear and the dread, I can tell you with absolute certainty that you’re going to be okay.

Trust the helpers.

Trust the flowers.

Trust.

Have you ever had an experience where you have felt the Universe was sending you a message? Please share!

 

The last time I tried out for Survivor was in 2013.

I was healthy.

Or at least, I thought I was.

(I had no idea that taking .5 mg of Klonopin at bedtime as prescribed was destroying my brain and my central nervous system.)

After 33 months of healing, I’m feeling well enough to be a contestant on Survivor.

Again.

I have no idea how I’d do.

I like to think I’m strong, but last week I got a bunch of splinters in my fingers and I complained for days.

I can handle extreme heat, but relentless rain? Not so much.

I get along with nearly everyone, and I find people endlessly fascinating.

But living with strangers? For over a month? In less than 4-star accommodations?

That could be rough.

This weekend, I enlisted a friend to help me make a video.

And yesterday, I submitted my video to Jeff Probst.

So, three years later, I’m crossing my fingers.

Again.

Here it is for your viewing pleasure.

If you are moved to tweet this post to @SurvivorCasting & @JeffProbst, I’d be grateful.

tweet me @rasjacobson

Nearly a year ago, I joined Neutral Ground, a peer support group for people who are divorced, widowed, or ending a significant relationship. A non-profit organization, Neutral Ground has no religious affiliation and is open only to adults.

Actually, that’s not true.

A year ago, I Googled “Need Help During Divorce.”

It took me nearly 6 months before I got up enough courage to attend my first meeting.

That Thursday night, I sat in my car in the parking lot for over a half hour, bawling my eyes out, grieving too many things at once.

I’d lost the person I thought was my best friend, the person who’d promised to love, honor and respect me for richer or poorer, in sickness and in health.

From the outside, it must have seemed like I had it all: a beautiful home in an affluent suburb; new cars to drive; a country club membership. We took regular vacations and owned a second home in Florida. I had fancy friends who threw fancy parties.

And yet.

I was desperately lonely.

No one is going to understand why I left, I thought. These people are going to think I’m nuts. 

But the thing is, they didn’t. The people at Neutral Ground made me feel welcome. Despite the fact that we’re all going through the same thing, we all process things very differently. Where one person is angry, another is sad. One woman misses the dog; another misses the snowblower. We listen to each other’s stories and monitor each other’s progress from week to week. We attend social events with each other and encourage each other to keep going. Every few months, there’s a communal dinner and everyone brings a dish to share.

It’s nice.

Not too long ago, I actually got to a meeting a little early.

(This doesn’t happen very regularly.)

Anyway, this guy was there.

And I just so happened to have my backpack with all my art supplies inside.

He was kind enough to let me paint his likeness.

And he was extra kind to let me post it here.

If you’re going through a difficult time in your life, I urge you to seek community. Everyone needs a place where they feel understood. Neutral Ground has been that place for me. We are not alone. We are never alone.

tweet me @rasjacobson

 

 

 

I keep remembering the powerful final scene from the film Schindler’s List, when Holocaust survivors give an inscribed ring to Oscar Schindler that reads: “He who Saves One Life Saves The World Entire.” After helping to save so many Jewish lives, Schindler expresses frustration that he couldn’t save more people.

“I didn’t do enough, “ he laments.

This is how I feel everyday.

Every day I speak to people who are going thru the horrifying post-acute withdrawal experience that I am going through, and I’m just…

Overwhelmed.

So many people kill themselves in withdrawal.

Why did G-d spare me?

What do I do with this gift of life?

I’m a member of several private Facebook Groups for individuals who are in the earliest days of the horrifying discontinuation syndrome associated with benzodiazepines like Klonopin, Valium, Xanax and Ativan. People contact me through my blog, via Facebook, on Twitter. I listen to people on the telephone, and I know how they are suffering.

People tell me I’m helping by writing honestly about my withdrawal experience.

But is it enough to simply blog about the experience?

Sure, I am raising awareness about the dangers of this class of drug.

But I want to speak with doctors and have them reconsider their prescription habits.

I want them to understand that just because they went to medical school, it doesn’t mean that they know everything.

I want doctors to understand that they should not put anyone on a medication that they would not be willing to take themselves.

That it’s not appropriate to prescribe someone a medication without informing the patient of the risks of taking such a medication.

I want to visit medical schools and speak to our future doctors.

I want to find a lawyer brave enough to help me initiate a class action suit where those of us who have been harmed have the opportunities to share our stories.

I want justice.

Doctors take a Hippocratic Oath promising to do no harm.

And yet.

Doctors do harm every single day.

Our drug companies are not educating doctors properly because pharmaceudical companies are in the business of selling drugs, it’s in their best interest to create individuals who become chemically dependent on the drugs they produce.

Our “more medicine is better” culture lies at the heart of healthcare, exacerbated by financial incentives within the system to prescribe more drugs and carry out more procedures.

I find myself wondering about my purpose.

Should I go back to school to be a good clinical psychologist, diagnosing and treating mental, emotional, and behavioral disorders?

Or an addictions counselor?

Or a counselor specializing in treating trauma?

Or an art therapist?

Or should I go rogue, and — work with out formal credentials — to help counsel individuals who are trying to wean off benzodiazepines safely?

A firm believer in the power of the people, I wonder if I am supposed to become an activist and attempt to singlehandedly spearhead a revolution? Call the media – radio, television, newspapers, magazines. Encourage people to bombard our politicians? Organize protests in front of doctors’ offices and hospitals?

Just the way people were harmed by an unscrupulous Tobacco Industry, the way the the people of Love Canal were harmed by the Hooker Chemical Company, the way the people of Flint Michigan were harmed by trusting their politicians to protect them, I believe those of us who have suffered iatrogenic harm have to fight to be seen and heard.

I put a lot of pressure on myself to do more, to work more, to help more people.

The reality is, I – myself – am still healing.

I still suffer from burning mouth syndrome, shortness of breath, and joint pains.

Pain that makes me wince.

I wish I didn’t have these symptoms, but there isn’t anything I can do about them.

All I can do is make a choice to get up each day and do the best I can do.

If I help one person, it’s enough.

It has to be.

For now.

Do you ever feel like this in your own life? That you’re not doing enough? How to find your answers?

tweet me @rasjacobson

 

 

 

 

I have a high tolerance for pain. A former gymnast, I was taught to push through discomfort. Once I landed badly after executing a backflip, yet somehow managed to complete my floor exercise routine. After limping around for several weeks, an X-ray revealed that I’d fractured my heel.

Years later, while wading in a river in the Adirondack Mountains, I stepped on a sharp something-or-other, and practically sliced off one of my toes. Since there were no hospitals in the area, my dangling appendage was reattached at a Boy Scout Camp – without the use of any anesthesia.

Hell, I delivered Tech Support without anesthesia.

Since I discontinued using Klonopin thirty months ago, one of the most troubling protracted withdrawal symptoms I’ve had to deal with has been extreme dental pain.

Sometimes, the pain is so bad, my teeth chatter. It was suggested to me that I might be grinding my teeth together. Or clenching.

I was fitted for a mouth guard, which I wear religiously.

I’ve tried changing my toothpaste, adding a special mouthwash, taking vitamin supplements.

Nothing helps.

When I am still and try to embrace the pain rather than resist it, I feel a circle of burning energy radiating from one side of my face to the other.

Not too long ago, someone told me about Burning Mouth Syndrome (BMS). Doctors and dentists do not have a specific test to diagnose this syndrome, but some experts believe BMS is caused by damage to the nerves that control pain and taste.

(Which makes sense, since extended use of benzos causes damage to the nerves.)

Think for a minute about the last time you stubbed your toe.

Or the time you slammed your hand in the car door.

Or that time you sliced open your finger.

When you’re injured, it’s difficult to pay attention to anything, except your pain.

Pain makes it hard to concentrate.

Hard to take on the responsibilities associated with a full-time job.

Hard to do house work.

Hard to be a mom.

Hard to smile.

People who have known me my whole life know that I was once a happy go-lucky person, who was on no medications and living a full life.

I’m frustrated because I know so many people who have been harmed by medications that we were assured would help us.

We are raised from infancy to believe that people in the white coats know what they’re doing and will make us better.

I trusted my doctor.

These days I know better.

• I know that half of veterans who died from opioid overdoses were also receiving benzos.
• I know that benzodiazepines are not recommended for patients with PTSD or trauma.
• I know that older patients are being transitioned from benzos to other therapies because of the heightened risk for dementia and death.
• I know that as far back as the 1960s, doctors knew benzodiazepines were associated with cognitive impairment. By the 1980s, they knew that benzos caused long-term brain damage, as well as a horrifying withdrawal syndrome.
• I know that it is not appropriate to prescribe benzos indefinitely, especially for insomnia, (and yet it is done all the time).

These days, we have increasing evidence that these mind-altering medications are harmful, and I believe we need to go into reverse and stop this increasing trend of prescribing them.

I never thought of myself as an activist, but I realize that my blog provides me with a platform from which I can share my concerns about psychiatric medications. It is a place where I  write about my own plight as well as the collective plight of this group of disenfranchised individuals.

I cannot stand by and let anyone else be harmed.

What I’m looking for now is legal representation: a firm willing to take on the responsibility of a potentially huge class-action lawsuit.

I realize I’m challenging the status quo in taking on Psychiatry, Medicine, big Pharma, even the FDA.

I realize my actions are not going to be popular.

I know I’m going to make people angry and uncomfortable. My thoughts are going to be labeled as unconventional, quirky, and anti-establishment.

People are going to say I’m crazy.

To me, this is Love Canal, Tuskegee, big Tobacco, and Flint Michigan all rolled into one. In each of those cases, individuals went to trusted government officials with suspicions that something just wasn’t right. In each case, individuals were reassured their concerns were unfounded; they were assured that they were safe. And in each case, individuals in power chose to overlook documents that indicated harm was, in fact, being done.

I used to giggle about grammar errors, and now I’m taking on what I believe to be a cover-up of gigantic proportions.

I’m terrified.

Disabled as I am, I’m doing it.

tweet me @rasjacobson

If you believe that you have been harmed by exposure to benzodiazepines, contact me via email at rasjacobson.ny@gmail.com.

At age 48, in the throes of a divorce, I’m figuring out who I am.

What I like to do.

After not investing one iota in myself for the last 20 years.

People keep telling me to do things that I enjoy.

“Have fun,” they say.

It’s awful to admit, but the concept of fun has become completely foreign to me.

In an effort to find fun and fill my craving for a creative community, I joined a sketch group. Convening mainly on weekends, we travel to different locations to meet and commit art together.

I’ve found that I feel less lonely while making art in public, so in-between meet-ups, I’ve taken to visiting local coffee shops to practice painting strangers.

In stealth mode.

Unfortunately, people often got up after only a few minutes, leaving me with an unfinished piece.

Which was unfulfilling.

I was taking too long in an effort to get it right.

I realized I had to speed up my efforts and focus on capturing the essence of an individual – his or her energy – in a quick sketch completed in just 4 or 5 minutes.

Once I stopped trying to be perfect, an interesting thing happened.

I started smiling.

Suddenly, people are approaching me. They call me “brave” for painting in public. Sharing how they used to love to knit/weave/paint/sew/make quilts … until someone told them they were terrible, and they stopped.

Sometimes people pull up chairs to sit with me and we end up talking about art, children, politics, love, divorce, grief.

And then they aren’t strangers anymore.

This morning, I went to the gym and, in addition to my mat and my sneakers and a change of clothes, I brought a backpack filled with pens and pencils, watercolors and brushes. Settled next to a cozy fireplace, I spotted a man with a strong profile, staring at an iPad.

After I finished sketching, I decided to walk over to introduce myself.

Awkwardly.

(You know, because I’m still the same dork you’ve come to know and love.)

Anyway, Taylor graciously allowed me to interview him and take his photograph. I received his permission to post his face and his likeness here on my blog.

So I’m setting a goal to complete one new sketch each day for a month. I’ll see if I want to continue after 30 days.

The most important thing?

I’m having fun again.

And I’m meeting new people.

 

How’d I do? What brave new thing have you tried to do recently?

This year has been the worst year of my life, one punctuated with little joy. Separating from my husband of 20 years has been personally devastating, and I’ve had to deal with the shame associated with the end of a failed relationship, not to mention the pain of knowing how much the dissolution of our marriage has hurt so many people that I care about.

Over the last 10 months, I’ve faced a lot of painful stuff.

Recognized the places where I haven’t always been honest.

Acknowledged my shadow self, the parts of me I’m ashamed of ~ the parts of me that feel damaged and broken.

The places I need to grow and change.

It’s been hard for me to write.

Anyone who has gone through a traumatic experience understands how sadness and fear drain you. Many times, I feared that I’d never write another word.

When I was sick, I felt like G-d was punishing me, stripping me of everything I’ve ever used for strength.

Everything I’d ever hidden behind.

This year, I’ve endured endless hours of alone-ness while trying to learn who I am now, the person I want to be in the future.

How strange to be 48 years old and realize I don’t know me at all.

One thing I’ve learned is that I’m a girl of paradoxes.

I crave the company of other people, and I like my solitude.

That I’m a wild artist who needs connection, and a homebody who needs to recharge.

That I’m tapped into some whacked-out energy in the universe: something that allows me to see other people’s pain, something that simultaneously scares me and makes me feel special.

That I’m smart.

And yet.

There is so much I don’t know.

That I want to be touched.

And yet.

I’m afraid of being touched.

I never thought I’d be living in an apartment at this stage in my life.

I liked having a home with soft leather couches, a pretty well-manicured lawn, two cars in the garage.

And yet, I felt trapped by all of it, unable to pursue my own dreams and desires. Unloved. Unsexy. Unseen.

I’m a brave woman. And I’m a terrified little girl.

All the time.

Until recently, I had no experience making independent decisions.

I’ve always relied on the expertise of others.

And waited for people to tell me what to do.

I followed instead of led.

And I liked it that way.

The thing is, when you believe others know things better than you do, you never have to make a mistake. Living on my own, I have no one else to lean on. For anything. Now? I’m accountable for every single decision in my life.

I’ve never lived like this, an unconventional girl in a conventional city.

So that’s where I am.

At the end of an awful year, I’m feeling strangely hopeful.

And I’m wishing each of you a wonderful new year filled with good health and much happiness. And I encourage each of you to take strides to move confidently in the direction of your dreams.

And if you haven’t dreamed about what you want in a long time ~ if your dreams have become the dreams you carry for your children, combined dreams you have with your spouse ~ dare to consider what you would do if you found yourself suddenly alone without anyone to care for you or anyone to look after. How would you fill your hours?

What are the biggest changes you’ve ever made in your life and what prompted you to make these changes?

 

 

 

Back in August, I walked 5 miles on a really uneven surface.

In cowboy boots.

I knew I did something dumb almost immediately since both my knees started making audible popping sounds.

I tried anti-inflammatories and ice and heat. Nothing helped. At one point, it got so bad that I couldn’t walk at all. That’s when I got scared.

I don’t like to run to the doctor too quickly, and it takes me a long time to admit that something is wrong.

In November, when I couldn’t walk without tears, I knew it was time to make an appointment.

After an exam and x-rays, my doctor determined that I have arthritis in my knees and meniscial degeneration. That’s simply a fancy way of saying that my knees are old and plum worn out. He also said that things weren’t so bad that we had to consider surgery.

My right knee healed quickly, but my left knee earned a cortisone shot (holy big fat needle!), and I’ve been wearing a heavy-duty knee brace for the last 8 weeks.

I seriously didn’t think I’d ever walk without pain again, but it’s getting better. It’s just happening slowly.

Apparently, that’s the way healing works. It takes a ridiculously long time so we feel grateful when we finally get thru it.

All my knee stuff got me thinking about pain.

Some of you may know that my husband and I recently separated.

It sucks.

It’s confusing. And it hurts.

Some of the time, I appear to be fine.  Some of the time, I’m lonely. And sometimes, I’m downright afraid.

It’s an invisible wound.

I never appreciated the pain associated with divorce before now. In fact, my ideas about divorce came mostly from movies. I imagined two people screaming and trying to push each other down a staircase.

But my situation is nothing like that.

My husband is a good man.

We’ve just grown apart.

These days my heart actually aches the way knee aches.

My day is punctuated by awkwardnesses.

I still like to receive his texts. I still reach out to touch his knee when we’re seated together because it feels natural, even though I know I shouldn’t do that any more. I want to confide in my husband the way I once did because… well… he’s been my confidante for over 20 years.

How do I ask my parents to take down that painting of me that they’ve got hanging in their living room: the poster-sized me wearing my wedding dress, holding all those purple irises? What do I do when a someone I’ve known for my entire married life decides to ignore me in the grocery store? And how do I stop crying when I hear love songs on the radio?

People keep telling me to be brave, to stay strong.

That the pain will get easier.

Unfortunately, no one can predict how long my heart is going to hurt, and there are no cortisone shots to take the edge off the pain.

Which is worse? A broken body or a broken heart? Any practical advice would be appreciated.